Author gives others road map for dementia

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Thursday February 21, 2013 7:35 AM

When my mother suddenly could no longer follow a Jell-O recipe she had been making for 50 years,
we knew.

Dementia soon caused her to drift away from us, as if on a boat. In lucid moments, the boat
might come closer to shore, where her family anxiously waited. But then she would drift out
again.Dementia was a gulf that couldn’t be bridged.

I relived some of that while reading
The Dementia Dance: Maneuvering Through Dementia While Maintaining Your Sanity
(Annotation, 144 pages, $10) by Rosemary Barkes.

The former speech and hearing therapist, who lives in Grove City, recounts the descent of her
mother, Lois Osborn, into dementia.Barkes wrote the book because, despite reading many other books
on the condition, she found little that prepared her for the challenges she would face.

For example, what do you do when a parent with dementia refuses to move from her home despite
being in danger? Barkes found herself doing something she loathed: She lied.

She told her mother they were going to an assisted-living facility just to have lunch, then left
her there.

“Never in my life had I felt so rotten, ashamed, guilty,” said Barkes, 75.

When she returned at dinnertime the same day, her mother seemed to have already adapted to her
new surroundings.

But it was a deceptive calm. Soon, her mother began calling Barkes or Barkes’ sister every
night, sobbing and begging to be taken home. The calls continued daily for an exhausting six
weeks.

The only thing that made the ordeal tolerable, Barkes said, was knowing that her mother was in a
safe place.

Throughout the book, she offers advice — perhaps the most important point being that every
resident needs an advocate.

Before moving her mother into the facility, Barkes volunteered there and developed a high regard
for it. Still, she said, lapses occurred that could have been disastrous.

One night, a new aide delivered solid food instead of the pureed fare that her mother could eat.
Fortunately, Barkes was present.

“What if I had not been there?” she writes. “Would someone have tried to feed Mom the solids?
Would she have choked? Died?”

Of all the difficulties posed by dementia, I found the role reversal the most unsettling. It’s
extremely difficult to watch the parent on whom you depended for everything become dependent
herself. The situation gets far worse than an inability to make Jell-O.

Watching her mother’s decline and death, Barkes said, prompted her to make some preparations.
She has already written her own obituary. And she has instructed her two children on what to do
should the day come when Mom is a danger to herself but refuses to move to safer surroundings.

“I told them, ‘Just do it against my will,’ ” she said in an interview. “I said, ‘I’m giving
you permission to do that against my will.’ ”